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Logo of nihpaAbout Author manuscriptsSubmit a manuscriptHHS Public Access; Author Manuscript; Accepted for publication in peer reviewed journal;
 
J Soc Work End Life Palliat Care. Author manuscript; available in PMC 2016 July 1.
Published in final edited form as:
J Soc Work End Life Palliat Care. 2015 Jul-Dec; 11(0): 224–243.
doi:  10.1080/15524256.2015.1108896
PMCID: PMC4741375
NIHMSID: NIHMS752691

Missed Opportunity: Hospice Care and the Family

Jennifer Tabler, MS,1,* Rebecca L. Utz, PhD,1 Lee Ellington, PhD,2 Maija Reblin, PhD,3 Michael Caserta, PhD,2 Margaret Clayton, PhD, APRN,2 and Dale Lund, PhD4

Abstract

A typical mission statement of hospice services is to provide quality, compassionate care to those with terminal illness and to support families through caregiving and bereavement. This study explored the ways that bereavement needs of caregivers, either pre- or post-death of their spouse/partner, were addressed using qualitative retrospective phone interviews with 19 caregivers whose spouse/partner was enrolled in hospice care for cancer. Overall, participants expressed high satisfaction with hospice care, most often noting a high satisfaction with the quality of care provided to their spouse/partner. During the pre-death phase, caregivers recalled being so focused on their spouse/partner’s needs that they rarely spoke with hospice staff about their own personal needs and emotions. Participants said that bereavement counseling occurred primarily after the death of the spouse/partner, in the form of generic pamphlets or phone calls from someone they had not met during prior interactions with hospice staff. These findings suggest that caregivers’ high satisfaction with hospice may be more associated with the quality of care provided to the spouse/partner than with bereavement support they received. Our findings illustrated a potential missed opportunity for hospices to address the family-oriented goals that are commonly put forward in hospice mission statements.

Keywords: caregivers, family caregivers, bereavement, hospice, grief/loss

A serious chronic illness affects the quality of life of the patient, as well as the wellbeing and quality of life of family members. For example, those close to someone with a terminal cancer diagnosis often take on significant caregiving tasks, face other role changes as the dying person is not as able to engage in the same level of daily life activities, and express many feelings of uncertainty and grief as the patient experiences end-of-life (Badr et al., 2010). Research has indicated the importance of family or couple-based interventions across the entire trajectory of the chronic illnesses, including and especially during the end-of-life phase (Kim & Given, 2008). Similarly, the mission statements of hospice agencies typically focus on the provision of palliative care that enhances the lives of people with life-limiting illness and their families (NHPCO, 2015).

Although several studies have documented caregivers’ satisfaction with hospice services (Steele, Mills, Long, & Hagopian, 2002; Meyers & Gray, 2001), few studies have examined the extent to which hospice does or does not address the bereavement-specific needs of family caregivers (Rathbun, Denham, & McCarthy, 2003), particularly from the perspective of the caregiver. This study used qualitative data from retrospective interviews to explore caregivers’ experiences with hospice services. In particular, this study focused on the whether and how hospice addresses the bereavement-related needs of family caregivers, as well identified how hospices might better serve the needs of family caregivers. This study focused specifically on spousal caregivers and offers practical suggestions for how hospice might be delivered in order to better address the inevitable feelings of grief and uncertainty experienced by family caregivers.

Literature Review

Spousal Bereavement

Although widowhood is a fairly common life event, it is regarded as one of the most distressing of all life transitions (Holmes & Rahe, 1967). This is because death of a spouse represents the loss of an intimate life partner and disrupts daily life routines and arrangements that were once shared by the couple (Stroebe & Schut, 1999); the interconnectedness of the marital couple’s social, emotional, financial, intimate, and instrumental activities makes spousal loss distinct from the loss of a parent or sibling (Sanders, 1979). A widow(er) must learn to cope with the multidimensional set of feelings, emotions, and adjustments that follow the death of the marriage partner. The period of coping and mourning, which is commonly characterized by heightened grief, loneliness, and anxiety, is referred to as bereavement.

During bereavement, widowed persons may experience, in addition to pervasive feelings of sadness and depression (Zisook et al., 1994), considerable changes in economic well-being (Hungerford, 2001), social relationships (Ha, Carr, Utz, & Neisse, 2005), performance of household chores (Utz et al., 2004), and increased mortality risk in the months immediately following the death (Kaprio, Koskenvuo, & Rita, 1987; Stroebe, Schut, & Strobe, 2007). The nature of the loss, as well as the survivors’ resources, past experiences, cultural traditions, and other personality styles or individual characteristics, often shape how one might experience and cope with the loss (Carr & Utz, 2001; Carr & Boerner, 2009), thereby making the experience of bereavement unique across individuals.

Although the relationship between bereavement and circumstances of spousal death is complex (Carr et al., 2001), persons who lose a spouse or partner to a chronic illness may be at a distinct advantage in terms of bereavement outcomes (Neimeyer, 2012). This may be due to the more prolonged ‘dying period’ is more prolonged than that experienced by widow(er)s whose spouse died suddenly (Burton, Haley, & Small, 2006). In general, confronting grief before the loss of a partner may benefit spousal caregivers by facilitating acceptance of the reality of their impending loss and allow caregivers to work through some of the pain and grief if they are able to recognize that the death of their spouse is proximate and inevitable (Worden, 2009). Anticipatory grief counseling delivered in a couples-therapy format may help improve communication between partners and even improve or strengthen the existing partner bond (Neimeyer, 2012). Counseling to address anticipatory grief may help the widow(er) establish an enduring connection with their partner, a continuing bond, which is an important part of the grieving process (Worden, 2009). Members of hospice care teams are tasked to provide adequate grief support to patients and caregivers during the time of anticipatory grief, in addition to post-death bereavement services, to ensure the best possible outcomes for patients and family caregivers to whom they give care (D’Antonio, 2014).

Hospice and Grief

Admission to hospice signals a shift in medical care; to focus primarily on comfort and palliative measures rather than curative and life prolonging treatments. The type of care signifies acceptance of the dying role by the terminally ill patient and his/her caregiver(s) (Prigerson, 1992). Research has found that the use of hospice care is correlated with more positive grief experiences among caregivers, perhaps by reducing their fear of death (Kramer et al., 2010) or by giving them time to engage in anticipatory grief.

A typical mission statement of hospice services is to provide quality, compassionate care to those with terminal illness and to support families through caregiving and bereavement. Regulations for Medicare reimbursement requires hospices to conduct risk assessments of the primary caregivers, provide at least one follow-up post-death contact with the family and also make bereavement counseling available within the first year following death (USDHHS, 2014).

In general, family caregivers have expressed overall satisfaction with the hospice services received (Steele et al., 2002; Miceli & Mylod, 2003). Evaluations of the quality of hospice services provided to patients and caregivers have included measures of effective communication, symptom management, and promptness of hospice service delivery (Steele et al., 2002; Rhodes et al., 2007). However, there is little information regarding caregiver satisfaction with bereavement-specific services provided by hospice (Rathbun et al., 2003). Only a handful of studies have engaged in such evaluation of hospice bereavement programs (Rathbun et al., 2003; Arriaza, Martin, Csikai, 2011).

One review of hospice programs found that most, if not all, programs had a defined bereavement program that had services available for caregivers for a minimum of 13 months, and that most hospice programs report providing pre-death bereavement care in the form of counseling for anticipatory coping. (Rathbun, Denham, and McCarthy, 2003). In general, hospice programs are likely to have defined bereavement services, and meet the basic requirements for Medicare reimbursement. However, these bereavement services may not be adequately tailored to the individual needs of caregivers (for example, services for Spanish-speakers), or address particularly complex family needs, due to financial constraints, lack of personnel, and limited staff education (Arriaza et al., 2011; Rathbun et al., 2003).

Research could not be found that assesses the extent to which caregivers take advantage of the counseling services available to them from hospice and whether the types of hospice-delivered interventions address any of the bereavement-oriented needs of the caregiver. This study seeks to shed light on the strengths and potential gaps in the hospice-provided bereavement services based on the lived experiences of family caregivers. To better explore caregivers’ experiences with hospice services, this study adopted a phenomenological approach; caregivers were asked to retrospectively recall their experiences with, and perceptions of, hospice staff and services. Participant responses were then coded and organized thematically. A phenomenological approach allowed for in-depth depictions of individual perspectives and experiences, and thus provides a unique dimension to our understanding of caregiver experiences with hospice. This qualitative research is unique in that it focused on the personal needs and hospice experiences of the caregiver, their bereavement needs and experiences in particular, and not on the needs and experiences of the dying person.

Method

The current study was undertaken to document the experiences of caregivers as they transition from hospice to bereavement, based on a phenomenological approach. The study is part of a larger longitudinal study funded by the National Cancer Institute called “Partners in Hospice Care” (PHC). PHC recruited family caregivers (age 45 and over) living in multiple diverse cities across the country. These individuals were followed from enrollment in hospice to patient death and then through the first two years of bereavement. Phone interviews were conducted with 19 of these caregivers. More detail about the larger PHC project can be found elsewhere (Reblin, Clayton, John, & Ellington, forthcoming; Caserta, Lund, Utz, & Tabler, 2015; Mooney et al., 2011). The University of Utah Institutional Review Board and those from the participating hospice agencies approved this human subjects’ research.

Sample

The sample was drawn from participants in the larger PHC study. Inclusion criteria required that caregivers be a spouse or co-residential intimate partner who utilized hospice services in a typical way. The PHC study involved a Randomized Control Trial (RTC) including an experimental condition and those in this group were not eligible. Finally, to avoid the time period immediately following the loss when grief symptoms are typically most intense (Zisook & Shear, 2009), we only contacted caregivers whose spouse or partner had died at least 3 months prior. Based on these criteria, a list of 33 potential participants was generated.

Of the 33 potentially eligible participants, three phone numbers on record were disconnected and two individuals explicitly opted out of participation in the phone interview. An additional nine participants did not answer phone after multiple contact attempts. Thus, a total of 19 participants were interviewed between July and December 2014. Twelve (63%) were female and 7 (37%) were male. The average age was 65.5 years (Standard Deviation (SD) =9.8). Participants represented seven different hospice sites across two different states: four participants (20% of sample) were drawn from two hospices in Massachusetts and 15 participants (80% of the sample) from five different hospices in Utah. Median length of hospice stay for the analytic sample was two months (average=2.5, SD=2.4, range=1–11). At time of interview, participants had been bereaved for an average of 8.2 months (SD=7.7), with a range of 8–32 months.

Procedures

Eligible individuals received a consent letter two weeks prior to being contacted. Over the phone, the interviewer asked participants if they had received the letter and then obtained verbal consent to proceed with the interview. The interviewer informed participants that they were not being audio-recorded, but that the interviewer would be taking detailed notes of the conversation. Finally, the interviewer informed participants that the general goal of the study was to “increase knowledge of caregivers’ experiences with the services provided by hospice, particularly those related to their bereavement needs, as well as the types of conversations they had with hospice staff members (such as social workers, aids, nurses, and chaplains).”

Interviews were conducted by phone by a trained research assistant using a semi-structured interview guide. Question prompts focused on hospice’s role in addressing the bereavement of caregivers before and after the death of their spouse (or partner). Examples of questions include, “Do you think the fact that you used hospice care has any bearing on how you are now coping with your loss?” and “Did you ever try to talk with members of the hospice team about what you were experiencing or feeling at that time?” See Appendix A for more complete interview protocol and question prompts. The average interview length was 24 minutes (SD=9.5, Range=10–45).

Phone interviews were conducted using a hands free headset that allowed the interviewer (JT) to type detailed notes directly into a report form generated using a web-based application called Research Electronic Data Capture (REDCap) during the phone interview. REDCap is designed to support data capture for research studies and provides user-friendly web-based case report forms, as well as real-time audit trails (Harris et al., 2009). Because interviews were not audio-recorded, efforts were made to document caregiver responses as accurately as possible. During the interview, the interviewer would ask the participant to repeat responses or pause when necessary. Immediately after the interview, the interviewer filled in additional detail and information into the REDCap report form. Taking detailed notes during the interview produced a chronological recording of what was said in the form of indirect or “soft” quotes (i.e., what the interviewer recalls the participant said verbatim), while the notes added immediately after the interview provided a synthesized summary of the interview (Hamo, Blum-Kulka, & Hacohen, 2004). Taking notes during and immediately after the interview, as well as using both a hands free device and computer-generated report forms, minimizes any data loss that may be associated with the use of field notes alone (Kieren & Munro, 1985). Data reported here represent the indirect or soft (summarized) quotes that were generated from the interview notes.

After reading through all interview notes, three team members (JT, RU, LE) engaged in a thematic analysis of the responses, by developing “codes” or short phrases that could be used to describe sections of data (Boyatzis, 1998). After review of these codes, four common responses or “themes” emerged. Guided by the four identified themes, one team member (JT) extracted all relevant examples from the interview notes. Additional team members then independently confirmed the fit of each example with the identified themes (RU, LE).

Results

The results are presented according to four themes found:Family versus Patient Focus, Caregiver Preparation for Loss, Addressing Caregiver Bereavement, and Continuity of Care. These four themes all suggest that hospice, as it is currently and typically delivered, is able to address critical needs associated with the patient’s changing health status, but may also miss opportunities to support the bereavement needs of spousal caregivers.

Family versus Patient Focus

Although a typical mission statement of a hospice has an explicit goal to address the needs of the whole family, not just the patient, the focus of hospice, according to caregivers, is on the patient and particularly on his or her changing symptoms. One participant noted:

Hospice was just the healthcare. I really liked hospice and thought they did a great job with [my husband] and in managing his pain and symptoms, but don't think it affected my coping or was a resource for how I am currently coping (Age 62, Female).

Another caregiver agreed:

They did their job to take care of my husband. They would offer to help me take care of my husband, but I wouldn't really take it, I didn't need it. I knew how to care for my husband (Age 60, Female).

A third caregiver revealed that both she and the hospice team were focused almost exclusively on her husband’s changing needs and pain,

Hospice talked to me about [the health of] my husband, who was dying from lung cancer. I couldn't bear to see him suffer… that would [have been] impossible for me (in reference to seeing him suffer). Hospice never let him suffer. I was more worried about [my husband and his pain] than myself (Age 75, Female).

It should be noted that most of the contact with hospice staff was with the assigned nurse and aids on their team; thus, it is perhaps not surprising that the majority of the conversations that caregivers had with hospice staff were focused on the changing symptoms of the patient.

Not one participant questioned that the primary, if not exclusive, focus should be on the dying patient. Caregivers commonly emphasized that both their focus and hospice’s focus was on treating the patient and his/her changing symptoms and pain, rather than addressing their needs as a caregiver. However, caregivers also expressed high levels of satisfaction with hospice, noting in particular that hospice staff (nurses, aids, social workers, chaplains, and volunteers) supported them in their caregiving role. In particular, hospice staff assisted the caregiver in fulfilling their spouse/partners’ wishes to be at home. A husband noted:

Hospice helped me fulfill my wife's wish to be at home, and that makes me feel at peace and grateful. I feel like I did everything I could for [my spouse], and hospice made that possible (Age 64, Male).

Fulfilling the spouse’s desire to die at home was often difficult for the caregiver, but is perhaps related to an improved ability to cope with the loss of the spouse. One caregiver revealed:

It would have been easier in the hospital. But, for [my husband], he wanted to be home. I felt good that I was able to send him off in a way that was safe and secure… it wasn't better for me, but for him it was what he wanted. So I felt good that I did for him what I would want him to do for me. I feel proud that I was able to have him home like he wanted… this brings me a sense of comfort. But it was not easy (Age 58, Female).

Overall, caregivers emphasized that hospice services were primarily focused on addressing the changing healthcare needs of the patient; however, they acknowledged that it was only with the support of the hospice staff that they as the family caregiver were able to fulfill the very important wish of patients to receive treatment at home, rather than in an institutionalized setting.

Caregiver Preparation for Loss

As mentioned above, caregivers viewed hospice services as focused primarily on the present and the dying spouse’s immediate health and pain management needs. Participants articulated that they rarely thought about how their life would be after their spouse or partner died. One caregiver stated,

I was in the moment. I didn't have the energy to think about what was going to happen. Me and [my partner] always said we would take cancer one baby step at a time. I was so preoccupied with taking care of [my spouse] that I never had time to think about me (Age 53, Female)

Caregivers expressed that they were intently focused on their spouse or partner, rather than focused on themselves. Another participant is noted as saying:

I thought very little about how my life would be after [my spouse] died. I was really in the moment. I was in the grieving process, even though I wasn't ready to admit it, but I was focused on her (Age 64, Male).

These comments suggest that the focus of the hospice staff and of the caregiver was on the present. Caregivers were not typically engaged in any sort of preparatory grief, skills training, or active bereavement prior to the death, while hospice staff did not appear to initiate or facilitate such preparatory behaviors either.

Addressing Caregiver Bereavement

Generally, interactions between caregivers and hospice staff failed to address questions of what would happen post-death, what the caregiver may have been feeling about the impending death, or what to expect in bereavement. This is not to say that hospice staff did not provide support for the caregiver; they just did not talk about impending bereavement with the caregiver. For example, in response to the question “Did you ever try to talk with members of the hospice team about what you were experiencing or feeling at that time? What did you talk about?” caregivers noted:

I didn't talk about how I was feeling all that much. I mostly talked about [my husband] and how to take care of him [with hospice staff]. They would go over [his] medicines and taking the right doses (Age 65, Female).

It was mostly about the process we were going through—dying and the passing experience. We were right there in the process of dying. It was hard to divert attention to what things would be like in a year or two. I think it would have been valuable to have that type of conversation and that it would have been helpful, but I never had it with [hospice staff] (Age 64, Male).

They never gave me advice on what was going on, or asked how I was feeling. Just how to care for [my spouse] (Age 75, Female).

These comments reveal that, during the pre-death stage, hospice staff offered invaluable information and support about how to be an effective caregiver and what to expect in terms of the patient’s changing symptoms; however, these participants shared an underlying sentiment that the hospice staff did not directly address the caregivers’ emotions related to the impending death of their spouse, or attempt to provide any sort of guidance or conversation on how to prepare for the loss or what to expect during bereavement.

In further probing, the interviewer asked whether any bereavement-oriented conversations occurred with the non-nursing staff members. Although caregivers recalled that social worker and chaplain visits were less frequent than those with nurses or aids (one female caregiver didn’t even recall talking to either the social worker stating, “the chaplain, the social worker… my husband mostly spoke to them” (Age 60, Female), two caregivers emphasized that the social workers focused on supporting them during the present, particularly in their role as a caregiver:

I never received advice [from the social worker] on anything more than the medical, and immediate needs of my wife. They spoke to me about her passing, but not what would happen after (Age 64, Male).

The best advice [the social worker and chaplain] gave me was explaining how to care for my husband. They were supportive of the caregiving and showed me how to do things. I liked that they didn't hit the triggers to make you cry… they were supportive, they gave me a bunch of choices. But the support was less emotional about myself, and more about supporting me by providing action steps (Age 72, Female).

Although bereavement-oriented conversations with hospice staff prior to the death were rare, participants commonly reported that hospice tried to reach out to them after the death of their spouse. In response to the question, “do you think the fact that you used hospice care has any bearing on how you are now coping with your loss, in what way?” one caregiver noted her utilization of services provided by hospice:

I went to grief counseling through hospice [after the death of my spouse], individual grief counseling. They offered a group grief counseling but I didn't use it. The individual counseling was very helpful and useful. Grief counseling was a resource for me to know that I wasn't alone, and that I wasn't losing my mind (Age 68, Female).

Other caregivers articulated that although they received information regarding the availability of bereavement counseling, they did not take advantage of these hospice-provided services and some saw the services as neither applicable nor relevant to their situations or needs:

I used to get little support letters from Hospice. They sent me a thing every once in a while, but I never went. I should have. It probably would have been a good thing. If I could give some advice, I would tell people to take advantage of those services (Age 65, Female).

Hospice called and invited me to an event. I would probably be more receptive to it now [This interview occurred 27 months post bereavement]. Early on when I got the call, I didn't want to leave her house, it would have been better if they had scheduled a time to see me, rather than just sending me an invitation to an event where I would know no one (Age 53, Female).

Caregivers expressed that hospice could be more direct and assertive when offering bereavement services, with some expressing regret that they did not take advantage of the available resources offered post-death. In some cases, grief itself may be a barrier to seeking or utilizing the hospice-provided bereavement services.

Continuity of Care

Some noted that there was an abrupt loss or change in support from hospice after the death of their spouse. Some expressed how difficult it was to go from nearly daily contact with hospice staff to nearly no contact. In response to the question, “How have you been doing since [your spouse/partner] died?” one caregiver articulated:

The only thing that troubled me with hospice, even though they were a “blessing,” is that once he died, they vanished in thin air. For them to leave like that, it was too much. I felt like I was lost again. My husband was gone, and then hospice was gone… I depended on them… I wish I could have had some closure. It’s hard to lose everyone all at once (Age 60, Female).

Similarly, two other caregivers noted that the lack of closure with hospice staff and the abruptness at which services ended was unpleasant to experience:

It would have been nice to see the caregivers [hospice nurses and other staff] so I could thank them. I would have liked to thank them and said farewell to them. I also noticed that they hadn’t come to [my spouse]’s funeral, which I guess they wouldn’t, but I felt that it was a little abrupt (Age 75, Female).

In particular, I would have liked to see the hospice volunteer who played the harp for me and [my husband] again (Age 53, Female).

Other participants stated that they wished they had received more direct bereavement services from hospice than was offered. In response to the question, “did any member of the hospice team ever give you advice or make suggestions to you for ways to deal with all that was going on at the time?”

I didn’t feel like I got a lot of personal input. When he died, there was a brief follow-up visit from hospice, but it was really about giving me a packet and saying, here are resources in the community. I would have found it helpful to have had some grief intervention. I would have liked 3–5 visits with the hospice staff after the death to talk it out, to process it and assess where she was and where I needed to be. It felt incomplete (Age 58, Female).

Discussion

Although the hospice mission is to provide family-based services and support, there may be missed opportunities or gaps in how current hospice practices address the needs of family caregivers, especially regarding the transition into bereavement. From the perspective of spousal caregivers, both the hospice staff and the family caregivers tend to focus primarily on the wellbeing, comfort, and pain management of the patient (with the hospice nurses and aids), or how they were adapting to, and/or managing, their role as caregiver (with the hospice social worker and/or chaplain, as well as the nurses and aids). Caregivers never doubted that the primary role of hospice should be to provide quality comfort care to the patient and felt that by so doing, hospice indirectly addressed their needs and wishes. They expressed high satisfaction with the quality of care hospice provided their spouse or partner, similar to previous studies (Steele et al., 2002). They appreciated the support and assistance that they received as caregivers from hospice staff.

Despite this, caregivers revealed that hospice staff did not do much to facilitate their own bereavement needs. Caregivers mentioned that they typically avoided thinking and considering what would happen after the death of their spouse or partner, and that there often was not time, energy, or desire to think about their own bereavement prior to the death. This is unfortunate as research on anticipatory grief identifies benefits to thinking and planning ahead for the feelings of grief and loneliness, as well as the daily life adjustments that need to be made in bereavement (D’Antonio, 2014; Sweeting & Gilhooly, 1990; Carr et al., 2001). For example, some bereaved spouses have identified deficiencies in their skills such as balancing checkbooks, handling financial matters, taking care of a household, grocery shopping and preparing meals if they had not had to do such tasks earlier in life (Utz, Caserta, & Lund, 2011; Stroebe & Schut, 1999). Lacking such daily-life competencies as a widow(er) can exacerbate feelings of anxiety and grief. Not having conversations about end-of-life preferences and wishes can lead to rumination about whether the caregiver did everything possible for the dying spouse.

Given this, hospice may be missing opportunities to address the bereavement needs of caregivers, which could be delivered both before and after the death of the spouse (Clayton, 1999). Training hospice staff to ask generic open-ended questions, such as “how are you doing,” may not be enough to get caregivers to think about and address how to prepare for the death itself or the life that will follow the loss, especially given the focus on the present (i.e., pain and symptoms) throughout the majority of the hospice visit. Although conversations about the imminent death may be uncomfortable for certain staff members, opening up the conversation with caregivers and other family members about their own grief, fears, and worries may facilitate the development of more proactive coping skills by family caregivers (Pennebaker, 1997). In some instances, the dying person may be able to help the caregiver better prepare for the loss by providing basic information or ‘training’ to take on a role that s/he used to do. Also, engaging in anticipatory grief work together might help strengthen their relationship or bond as well.

There is a potential opportunity for hospice to provide a pre-death intervention to caregivers that would better prepare them for their role as a widow or widower. For example, training of all hospice staff should continue to emphasize the development of communication skills, so staff become more comfortable addressing uncomfortable topics, particularly those related to loss and grief, with the caregiver. As staff becomes more comfortable talking about these difficult topics, caregivers will be given opportunities to honestly and explicitly address the myriad feelings and emotions they are experiencing and anticipating, rather than focusing only on their role as a caregiver. In addition, hospice staff members such as social workers could provide workbooks or worksheets that encourage the caregiver and/or the couple to engage in anticipatory bereavement. These workbooks might include suggestions for specific conversation or activities that the couple could engage in to address the caregiver’s feelings of grief, or to help the caregiver think about the daily life tasks s/he will need to address after the spouse dies. By having hospice staff help facilitate anticipatory grief and coping in these small ways, they may enhance the preparedness of the caregiver to enter the widow or widower role. In turn, the caregiver may have more favorable bereavement outcomes, while the hospice may be able to provide more comprehensive services that address the needs of the family, as well as the pain and symptom-management needs of the dying patient.

As is typical in current hospice practice, bereavement services are provided almost entirely after the death of the spouse, and come in the form of a phone call, typically from the hospice bereavement coordinator (social worker) with whom the caregiver is previously unfamiliar, or a generic pamphlet or letter sent by mail. Although these services are clearly provided to address the needs of bereaved caregivers (and are stipulated by Medicare reimbursement regulations), participants interpreted them as somewhat impersonal and generic. Sending information, providing invitations to events, and telephone calls from unknown staff members was not tailored to the needs of individual caregivers, nor did caregivers feel that it honored the very personal and close relationship they had often developed with hospice staff during the dying process. Furthermore, as our interviews indicated, these forms of contact were typically not enough to draw caregivers to use the services and were interpreted by some caregivers as a dramatic drop off of contact from the hospice.

The lack of continuity of hospice services, from pre-death into bereavement, may be an additional missed opportunity. Caregivers commonly noted that at the time of death, there was an immediate and abrupt end of services provided by the staff with whom they had become quite familiar (i.e., nurses and aides, in particular). The utilization of another team member (i.e., bereavement coordinator, who was not the social worker assigned to the hospice team pre-death) to cover bereavement care was a further indication of this potential lack of continuity, as seen from the perspective of the caregiver. For these reasons, hospice might consider utilizing the existing care relationships that were established during the course of hospice care to provide prolonged services, or at least a better transition into bereavement services. The hospice team typically includes supportive staff members such a social worker or chaplain; perhaps these staff members, especially those that were present with the family during the pre-death phase, may be the ones to deliver the letters or phone calls to the caregiver during the bereavement phase. This may provide the caregivers better and more continuous support and connection to the hospice. In particular, it may lessen the compounded feelings of loss they expressed: upon death, they not only lost their spouse, but also the hospice staff with whom they had bonded and shared a very intimate experience.

Strengths and Limitations

While these interview data provided unique insight into how hospice is perceived by caregivers, and while these studies have pointed to some specific practice recommendations, there are several methodological limitations of this study. The use of retrospective interviews may have resulted is some recall bias related to the hospice experiences. Future research should attempt to prospectively measure the caregiver experiences, either qualitatively and/or quantitatively, to better understand the needs and how the hospice team may be able to better address those needs within existing practices and service delivery.

In addition, the interviews were not audio-recorded. The same team member (JT) conducted all interviews, and took extensive notes during, and immediately following, the interview. Although, the first five interviews and notes were reviewed by an additional team member (RU) as a “pilot” to ensure that the interviews were done in a systematic manner, there are no additional ways to confirm the accuracy or completeness of the notes. Future studies should seek to use more rigorous interview techniques, such as audio or video recording (Kieren & Munro, 1985).

Furthermore, our population may be somewhat unique. For example, participants may have had longer hospice stays than the national average (Sengupta et al., 2014), which may have given these hospices more opportunities to interact with caregivers in meaningful ways. This limitation, therefore, may suggest that the results are conservative, that is, caregivers more generally may be even less likely to engage in bereavement-related conversations with hospice staff members than the participants of this study. However, because these individuals were selected from a pool of participants who had already consented and agreed to enrollment in the larger project (and therefore had interacted extensively with project staff and had completed telephone and paper surveys previously), our study population may have been more highly motivated to respond, and more open and forthcoming in their responses to interview questions, than the general population.

The qualitative results of this study cannot be generalized to all hospice settings or to all bereaved caregivers. However, the use of in-depth interviews allowed for greater illustration and exploration of the perspectives of the bereaved spousal caregivers. The general themes that emerged from the interviews with caregivers in this sample (who represent different hospice practices from across the United States) provide considerations for hospice service delivery, particularly regarding how to best address the bereavement needs of family caregivers.

Conclusion

As evidenced by the focus on family, in addition to the patient, in the typical hospice mission statement, it is not surprising that hospices try to provide family-based interventions and include family in aspects of their services through the use of team-based care. To this end, caregivers agreed that the hospice enabled them to be a caregiver and provide an in-home dying experience for their spouse. However, these caregivers also suggested that additional strides could be made to identify and respond to their specific needs for support through the dying and bereavement process. Although the focus on the present (i.e., the dying patient’s dynamic needs) is critically important and should remain the priority in home hospice care delivery, neglecting to address the future (i.e., the bereavement needs of the caregiver) is a missed opportunity for hospices to help family caregivers transition into their future life without the person for whom they provided care. These missed opportunities may also result in not being able to facilitate positive bereavement outcomes such as improved or strengthened marital/partner bonds, bringing closure to the caregiver-patient relationship, and helping the caregiver to be better prepared for the social, emotional, and daily life skills that are needed to cope with life as a single person.

Acknowledgments

Research reported in this publication was supported by the National Cancer Institute of the National Institutes of Health under award number P01CA138317. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

Appendix A

Interview Guide and Question Prompts (Bereaved Participant – 3 Months Post Death or Later)

Contact Protocol
  • Part 1: Establish REDCap form for potential participant
  • Part 2: Call participant using hand-free device;
    1. If participant doesn’t answer, leave message on initial contact: Identify yourself (i.e., Partners in Hospice Care), refer to the opt-out letter, leave call back number, identify when you will be calling again (____ date)
    2. Leave message every 3–4 attempts to contact
    3. After the 4th message, state that you will be ending attempts to contact after ____ date
  • Part 3: Once you’ve achieved successful contact:
    1. Identify yourself (i.e., Partners in Hospice Care) and refer to the opt-out letter
    2. Inform participants about the goal of the study (i.e. increase knowledge of caregivers’ experiences with the services provided by hospice, particularly those related to their bereavement needs, as well as the types of conversations they had with hospice staff members (such as social workers, aids, nurses, and chaplains)
    3. Obtain informal verbal consent
    4. Conduct interview using interview guide and REDCap report form or set-up an appropriate time to conduct the interview

Guiding Open-Ended Questions for Retrospective Semi-Structured Interview
  1. How have you been doing since _____ died? How have things been going for you? (Ice breaker).
  2. Do you think the fact that you used hospice care has any bearing on how you are now coping with your loss? In what way?
  3. During hospice care, how much did you think about how your life would be after ____ died? (Almost all the time, Fairly often, Occasionally, Rarely or never)
  4. What were the things you thought about? (Probe for responses that may be loss- or restoration-oriented). Did you ever discuss these issues with members of your hospice team? (Any staff member in particular?)
  5. Looking back to the time before _____ died when you were using hospice, what sorts of things did you do to help you cope emotionally with feelings of loss or grief you were experiencing because he/she was dying? (Can probe: How well did that work for you?)
  6. Did you ever try to talk with members of the hospice team about what you were experiencing or feeling at that time? What did you talk about? (Probes: What kind of things did they tell you or do for you then? Was it helpful to you? Was there a particular hospice staff member who helped you cope?)
  7. Thinking back to the time when ______ was sick or when you realized that s/he was dying, were there specific tasks or activities that became important for you to learn or master? For example, were there activities that s/he used to do that you realized that you would need to learn about?
  8. Did you ever try to talk with members of the hospice team about new things you had to take on? If so, what kind of things did they tell you? Was it helpful to you (Or not)? Was there a particular member of the hospice staff that talked to you about these things?
  9. Did any member of the hospice team ever give you advice or make suggestions to you for ways to deal with all that was going on at the time? Which team member? (Probe for examples)

Footnotes

Conflicts of Interest: None

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